As Terry discussed yesterday, Leo's Chylothorax is back. In the last 24 hours we heard a wide range of treatment options from major surgery to wait it out. Today around 3:00 they landed on the wait and see approach for a few more days. He had enough additional fluid output today to confirm the significant amount of fluid from yesterday was not just a leftover pocket, but they felt the amount was small enough that it wasn't threatening his breathing and could still just be healing. So for now they are continuing to feed him the fat free formula and are hoping for limited drainage indicating he is healing.
They have been weaning his paid meds and today they went from every 8 hours to every 12. He was supposed to get his dose at 4:30 but didn't get it until 8:30 on the new schedule. He was super upset for those 4 hours and I had to sit by his bed and hold his arms and legs in a swaddle position while he whimpered. The day nurse was not very good and she was no help. I was happy to see he maintained good breathing stats during this time, but its really hard to see him so upset. If he struggles again in the morning, I'm going to see if they will put him back on the 8 hour schedule. I've heard from adults with chest tubes that they are really painful so it could still be bothering our little guy.
Today I got to see Terry for a few hours for the first time since Saturday afternoon. Our new schedule is working, but leaves little time with us in the same place. Hopefully we won't have to do this for too long!
Oh Kate! Four minutes of that would have been brutal - I can't imagine how you endured four hours. My heart goes out to you guys. Loving the updated picture - such a sweet little boy :) praying on... - the Stovers
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